Support and resources

For most patients, acromegaly is a life-changing disease, even when it is well managed. It can cause noticeable changes to the person’s appearance and internal state. Many patients live with the disease for years before it is diagnosed.

Accepting these changes and balancing the ‘old’ self with the ‘new’ self can be challenging. However, there is help available if you reach out. Whatever your challenges, concerns or questions, it’s important to remember that you are never alone. With treatment, guidance, and support, it is possible to live well with acromegaly.

Patients and caretakers can find support through national meetings with doctors, nurses, and other patients, as well as through patient associations, online discussion groups, small local meetings, and national and international websites.

“Living with acromegaly” brochure
Being diagnosed with acromegaly can raise many questions and feelings. This brochure has been created to help you better understand the condition, recognise common symptoms, and learn about available treatment options and support. Whether you have recently been diagnosed or have been living with acromegaly for some time, we hope this resource helps you feel informed, supported, and less alone.
Download the brochure

“Questions to ask your healthcare team” conversation aid
Living with acromegaly often brings new questions over time — from diagnosis and treatment to follow-up care and everyday life. This patient-developed tool is designed to help you make the most of your appointments, support open conversations with your healthcare team, and make it easier to raise topics that may feel difficult to bring up.
Download the conversation aid